Die Pflegequalitätsprüfungen nach § 114 ff SGB XI und die Begehungen der FQA (ehemals Heimaufsicht) wurden mit Abklingen der Pandemie wieder aufgenommen. Trotz der Einführung eines neuen Prüfinstruments führt dies weiterhin zu Irritationen und auch ethisch gerahmten Problemen in der Praxis. Dies war ab Sommer 2021 Gegenstand eines Beratungsprozesses im Ethikbeirat der Hilfe im Alter gGmbH der Inneren Mission München, Diakonie München und Oberbayern und führte zu einer Bearbeitung in der Frühjahrssitzung 2022 mit Vertretern des StMGP (Staatsministerium für Gesundheit und (...) Pflege, heute StMGPP) und des MDB (medizinischer Dienst Bayern, der im Auftrag der gesetzlichen Kranken- und Pflegeversicherung tätige medizinische und pflegerische Beratungs- und Begutachtungsdienst), sowie zu einem konsentierten Papier des Beirats. Die Ziele der Prüfung, die Prozesse dazu in den Einrichtungen und ihre Auswirkungen auf die pflegebedürftigen Menschen und das Pflegepersonal wurden darin unter ethischen Gesichtspunkten thematisiert. Auch wenn die Notwendigkeit einer externen Kontrolle nicht grundsätzlich in Frage gestellt wird, ist der Aufwand für die Indikatorenerhebung, die Herausforderung des Fachgesprächs und die Art und Weise der Ergebnisformulierung weiterhin kritisch zu diskutieren und weiter zu entwickeln. Es zeigt sich die organisationsethische Relevanz der Pflegequalitätsprüfung sowohl hinsichtlich der strukturellen Verankerung im einrichtungseigenen Qualitätsmanagement als auch hinsichtlich der Notwendigkeit einer Beteiligungskultur der Betroffenen. Damit wurde einmal mehr evident, wie wichtig das Anliegen des Ethikbeirats „Betroffene zu Beteiligten zu machen“ für die Mitarbeitenden und die Kultur der Einrichtungen ist, aber auch für alle anderen Ebenen der Versorgung und politischen Willensbildung, die hierfür verantwortlich Entscheidungen treffen. (shrink)

Proposals for health care cost containment emphasize high-value care as a way to control spending without compromising quality. When used in this context, ‘value’ refers to outcomes in relation to cost. To determine where health spending yields the most value, it is necessary to compare the benefits provided by different treatments. While many studies focus narrowly on health gains in assessing value, the notion of benefit is sometimes broadened to include overall quality of (...) life. This paper explores the implications of using subjective quality of life measures for value assessment. This approach is claimed to be more respectful of patients and better capture the perspectival nature of quality of life. Even if this is correct, though, subjective measurement also raises challenging issues of interpersonal comparability when used to study health outcomes. Because such measures do not readily distinguish benefits due to medical interventions from benefits due to personal or other factors, they are not easily applied to the assessment of treatment value. I argue that when the outcome of interest in value assessment is broadened to include quality of life, the cost side of these measures should also be broadened. I show how one philosophical theory of well-being, Jason Raibley’s “agential flourishing” theory, can be adapted for use in quality of life research to better fit the needs and aims of value assessment in health care. Finally, I briefly note some implications of this argument for debates about fairness in health care allocations. (shrink)

A remarkable surge in efforts to assess the quality of life of patients has occurred in recent years in medical research. Philosophical discussions of these developments have focused, on the one hand, on epistemological reservations about the plausibility of measuring quality of life and, on the other hand, on moral and ethical qualms about the meaning of life conveyed in such assessments. Whilst providing an important note of caution, such critiques fail to recognise two basic principles of (...) class='Hi'>quality of life in medical research. Firstly it is intended to provide understanding about groups and categories of patients rather than individuals. Secondly the purpose of such research is to produce generalisations about the relative costs and benefits of specific health care interventions rather than absolute judgements regarding the quality of life of patients per se. Selecting a good quality of life measure for a clinical trial requires balancing criteria such as validity with practical feasibility. Such measures will play an increasingly central role in providing research evidence to improve health care. (shrink)

Source: Author: Mohammad Sabahi Bidgoli, Ali Kebriaei, Sayed Gholamabas Moosavi Background and Aim: Patients' viewpoints are commonly used to assess quality of care in diverse healthcare organizations. This permits managerial decisions to be made based on knowledge rather than conjecture. The purpose of the current study is to investigate quality gap of family health care through measuring differences between clients’ perceptions and expectations at Kashan city health centers in Iran.Methodology: A cross-sectional design was applied (...) in 2013. The study sample was composed of 384 women clients of family health services randomly selected from Kashan city health centers. The SERVQUAL questionnaire was used for data collection. Service quality gap was measured by computing the difference between the rating respondents assign to expectations and perceptions statements. For pair wise comparison of the expectations and perceptions the Wilcoxon Signed Rank test was used. Internal consistency of the scale was confirmed with Cronbach's Alpha coefficients.Findings: In all dimensions of the services a significant (P ]]>. (shrink)

The care of patients should be professional, human and humane. This is an ethical issue. The words human (inhimillinen) and humane (ihmisläheinen) have different meanings in the Finnish language. At Kuopio University Hospital (1200 beds), in Finland, it was decided to provide patients with professional and humane caring. Ethical values differ for different groups of people. Therefore humane caring was assessed by questioning both hospital patients (n = 160) and staff (n = 196). The data were subjected to content (...) analysis. The result was that the values obtained for both patients and staff were similar. Five descriptive categories of humane caring emerged. To discover what kind of caring was provided for patients, the categories were operationalized into 66 criteria and a questionnaire was drawn up on the basis of these criteria. The data for evaluation of the quality of caring were collected from patients (n = 1708). The data were analysed using cross-tabulations and the chi-squared test; sum variables were calculated for the five standards. The results suggest that special attention should be paid to vulnerable patient groups (e.g. the elderly and the young). One means of ethical management is to support our staff to care more humanely by discussing with them the results of this study, setting standards and criteria for humane caring and what this means in practice. It is hoped our caring will therefore be more humane. (shrink)

PurposeContinuous patient-reported outcomes to identify and address patients’ needs represent an important addition to current routine care. The aim of this study was to identify and determine important dimensions of health-related quality of life in routine oncological care.MethodsIn a cross-sectional qualitative study, interviews and focus groups were carried out and recorded. The interviewees were asked for their evaluation on HrQoL in general and specifically regarding cancer treatment. The material was transcribed and analyzed using qualitative content analysis (...) based on Mayring. The results were reviewed in an expert discussion.ResultsInterviews with patients and clinicians, as well as five focus groups with clinicians were conducted. Initially, nine deductive and two inductive categories on HrQoL were built. Four categories were excluded following the qualitative content analysis because they were hardly or not at all mentioned by participants. Following on from the analysis of the expert discussion, one dimension was added, and two further categories were excluded. The resulting system consisted of six dimensions: emotional health, physical ailments, autonomy, social functionality, dignity, and resources.ConclusionThe identified dimensions of HrQoL in routine oncological care were found to differ from those used in existing HrQoL measurements for patients. Further research is needed to test and evaluate the presented structure in a larger sample of cancer patients to further assess its psychometric properties. (shrink)

This study brings together two important literatures together in the one volume. One concerns the role of quality assessments in social policy, especially health policy. The second concerns ethical and social issues raised by prenatal testing for disability. Hitherto, these two literatures have had little contact with each other: few scholars have written about both, or have compared the two domains in a systematic way, while people with disabilities and disability scholars are underrepresented in recent discussion on (...) class='Hi'>health policy and quality of assessment. This book turns the perspectives of disability scholars on issues that have largely been the province of health methodology, policy and philosophy, while angling philosophical policy analysis on problems that have largely been the province of disability scholarship. This volume will be sought after by bioethicists, philosophers, and specialists in disability studies and healthcare economics. (shrink)

This study aimed to determine the relationship between acute stress and quality of life and explore their influencing factors on health care workers. A descriptive cross-sectional study was conducted, and a sample of 525 health care workers was recruited from 15 hospitals through a convenient sampling method. Participants completed an online self-report questionnaire to assess their acute stress and quality of life. Descriptive and multiple linear regression statistics were used for this analysis. The results (...) regarding acute stress responses varied significantly among the differences in marital status, physical activity, work status, perceived risk of contracting COVID-19, and the expected duration of the pandemic. Moreover, a younger age, lack of physical activity, being a front-line medical staff, and higher acute stress scores indicated a worse quality of life. Healthcare workers’ acute stress was negatively correlated with their quality of life. Therefore, the authorities should pay special attention to health care workers’ mental health and provide them with timely protection during the pandemic. (shrink)

Health care organization is entering a new age. Focus is increasingly shifting from individual health care institutions to interorganizational collaboration and health care networks. Much hope is set on such networks which have been argued to improve economic efficiency and quality of care. However, this does not automatically mean they are always ethically justified. A relevant question that remains is what ethical obligations or duties one can ascribe to these networks especially because (...) networks involve many risks. Due to their often amorphous and complex structure, collective responsibility and accountability may increase while individual responsibility goes down. We argue that a business ethics approach to ethical obligations for health care networks, is problematic and we propose to opt for a patient perspective. Using the classic four principles of biomedical ethics it is possible to identify specific ethical duties. Based on the principle of justice, health care networks have an ethical duty to provide just and fair access for all patients and to be transparent to patients about how access is regulated. The principle of nonmaleficence implies an obligation to guarantee patient safety, whereas the principle of beneficence implies an obligation for health care networks to guarantee continuity of care in all its dimensions. Finally, the principle of autonomy is translated into a specific obligation to promote and respect patient choice. Networks that fail to meet any of these conditions are suspect and cannot be justified ethically. Faced with daunting challenges, the health care system is changing rapidly. Currently many hopes ride on integrated care and broad health care networks. Such networks are the topic of empirical debate, but more attention should be given to the ethical aspects. Health care networks raise new and pressing ethical issues and we are in need of a framework for assessing how and when such networks are justified. (shrink)

Although ethics consultation is offered as a clinical service in most hospitals in the United States, few valid and practical tools are available to evaluate, ensure, and improve ethics consultation quality. The quality of ethics consultation is important because poor quality ethics consultation can result in ethically inappropriate outcomes for patients, other stakeholders, or the health care system. To promote accountability for the quality of ethics consultation, we developed the Ethics Consultation Quality (...) class='Hi'>Assessment Tool. ECQAT enables raters to assess the quality of ethics consultations based on the written record. Through rigorous development and preliminary testing, we identified key elements of a quality ethics consultation, established scoring criteria, developed training guidelines, and designed a holistic assessment process. This article describes the development of the ECQAT,.. (shrink)

Political theorists generally defend the moral importance of health care by appealing to its purported importance in promoting good health and saving lives. Recent research on the social determinants of health demonstrates, however, that health care actually does relatively little to promote good health or save lives in comparison with other social and environmental factors. This article assesses the implications of the social determinants of health literature for existing theories of health (...) care justice, and outlines a new approach that can justify publicly subsidized comprehensive health care despite its limited contribution to good health. Even if health care plays a relatively limited role in promoting good health, it remains morally important because of the care it provides to individuals. As such, it can be justified in terms of care ethics. When health care is justified primarily in terms of care rather than health, however, the goals of a just health-care system shift. The measure of a just health-care system is no longer strictly its ability to generate good health outcomes but also its ability to provide individuals with accessible, good quality daily care. This different focus has important consequences for the way we think about the institutions of a just health-care system as well as for the delivery and allocation of medical goods and services. (shrink)

In this companion volume to their 1981 work, A Philosophical Basis of Medical Practice, Pellegrino and Thomasma examine the principle of beneficence and its role in the practice of medicine. Their analysis, which is grounded in a thorough-going philosophy of medicine, addresses a wide array of practical and ethical concerns that are a part of health care decision-making today. Among these issues are the withdrawing and withholding of nutrition and hydration, competency assessment, the requirements for valid surrogate (...) decision-making, quality-of-life determinations, the allocation of scarce health care resources, medical gatekeeping, and for-profit medicine. The authors argue for the restoration of beneficence to its place as the fundamental principle of medical ethics. They maintain that to be guided by beneficence a physician must perform a right and good healing action which is consonant with the individual patient 's values. In order to act in the patient 's best interests, or the patient 's good, the physician and patient must discern what that good is. This knowledge is gained only through a process of dialogue between patient and/or family and physician which respects and honors the patient 's autonomous self-understanding and choice in the matter of treatment options. This emphasis on a dialogical discernment of the patient 's good rejects the assumption long held in medicine that what is considered to be the medical good is necessarily the good for this patient. In viewing autonomy as a necessary condition of beneficence, the authors move beyond a trend in the medical ethics literature which identifies beneficence with paternalism. In their analysis of beneficence, the authors reject the current emphasis on rights- and duty-based ethical systems in favor of a virtue-based theory which is grounded in the physician- patient relationship. This book's provocative contributions to medical ethics will be of great interest not only to physicians and other health professionals, but also to ethicists, students, patients, families, and all others concerned with the relationship of professional to patient and patient to professional in health care today. (shrink)

During the last decade a “technical” approach has become increasingly influential in health care priority setting. The various country reports illustrate, however, that non-technical considerations cannot be avoided. As they often remain implicit in health care package decisions, this paper aims to make these normative judgements an explicit part of the procedure. More specifically, it aims to integrate different models of distributive justice as well as the principle of solidarity in four different phases of a decision-making (...) procedure, and to identify important moral choices which present themselves. First four important justice models are discussed, then a justification is given for their inclusion in a four-step decision making procedure. This is followed by a discussion of different justice and solidarity problems—with their inherent conceptual difficulties in each of these stages. The paper concludes with a summary of the major moral choices that are to be made in health care package decisions. (shrink)

BackgroundVarious forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design has been implemented. CES practitioners themselves reflected upon the quality of ethics support within each other’s health care organizations. This study presents a qualitative (...) evaluation of this Responsive Quality Assessment (RQA) project.MethodsCES practitioners’ experiences with and perspectives on the RQA project were collected by means of ten semi-structured interviews. Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of the decisions.ResultsThe main findings illustrate the relevance of the RQA with regard to fostering the quality of CES by connecting to context specific issues, such as gaining support from upper management and to solidify CES services within health care organizations. Based on their participation in the RQA, CES practitioners perceived a number of changes regarding CES in Dutch health care organizations after the RQA: acknowledgement of the relevance of CES for the quality of care; CES practices being more formalized; inspiration for developing new CES-related activities and more self-reflection on existing CES practices.ConclusionsThe evaluation of the RQA shows that this method facilitates an open learning process by actively involving CES practitioners and their concrete practices. Lessons learned include that “servant leadership” and more intensive guidance of RQA participants may help to further enhance both the critical dimension and the learning process within RQA. (shrink)

The use of the Quality Adjusted Life-Year (QALY) as a measure of the benefit obtained from health care expenditure has been attacked on the ground that it gives a lower value to preserving the lives of people with a permanent disability or illness than to preserving the lives of those who are healthy and not disabled. The reason for this is that the quality of life of those with illness or disability is ranked, on the QALY (...) scale, below that of someone without a disability or illness. Hence we can, other things being equal, gain more QALYs by saving the lives of those without a permanent disability or illness than by saving the lives of those who are disadvantaged in these ways. But to do so puts these disadvantaged people under a kind of double jeopardy. Not only do they suffer from the disability or illness, but because of it, a low priority is given to forms of health care that can preserve their lives. This, so the objection runs, is unjust or unfair. This article assesses this objection to the use of QALYs as a basis for allocating health care resources. It seeks to determine what is sound in the double jeopardy objection, and then to show that the defender of QALYs has an adequate response to it. (shrink)

End-of-life disputes in Ontario are currently overwhelmingly assessed through the singular lens of patient autonomy. The current dispute resolution mechanism does not adequately consider evidence-based medical guidelines, standards of care, the patient’s best interests, expert opinion, or distributive justice. We discuss two cases adjudicated by the Consent and Capacity board of Ontario that demonstrate the over emphasis on patient autonomy. Current health care policy and the Health Care Consent Act also place emphasis on patient autonomy (...) without considering other ethically defensible factors. We argue that current policy and legislation require amendment, and unless there are measures undertaken to modify them, both the quality of care provided and the long-term capabilities of the health care system to remain publicly-funded, comprehensive and equitable, are at stake. (shrink)

Background and AimsEnd-of-life discussions can be difficult for seriously ill adolescents and young adults. Researchers aimed to determine whether completing Voicing My CHOiCES —a research-informed advance care planning guide—increased communication with family, friends, or health care providers, and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation (...) quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family and friends reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience, difficult experience, appreciated a guide to facilitate discussion, provided relief, and created worry/anxiety. Only 1 HCP noted a treatment change. Family, friends, and HCP did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult. (shrink)

The current institutional focus on patient satisfaction and on surveys designed to assess this could eventually compromise the quality of health care while simultaneously raising its cost. We begin this paper with an overview of the concept of patient satisfaction, which remains poorly and variously defined. Next, we trace the evolution of patient‐satisfaction surveys, including both their useful and problematic aspects. We then describe the effects of these surveys, the most troubling of which may be their influence (...) on the behavior of health professionals. The pursuit of high patient‐satisfaction scores may actually lead health professionals and institutions to practice bad medicine by honoring patient requests for unnecessary and even harmful treatments. Patient satisfaction is important, especially when it is a response to being treated with dignity and respect, and patient‐satisfaction surveys have a valuable place in evaluating health care. Nonetheless, some uses and consequences of these surveys may actively mislead health care.Our critique of patient‐satisfaction surveys takes into consideration three different ways patients may be “satisfied.” First is the provision of medically necessary care that actually improves their outcomes. The second concerns interventions that patients or families want but that are medically unnecessary and may negatively affect health outcomes. The third category—comprising factors that are less likely to affect health outcomes but may certainly contribute to a sense of dignity and well‐being—includes “humanistic” aspects of health care, such as good communication and treating patients with respect, as well as peripheral aspects, such as convenient parking and designer hospital gowns. These distinctions are important as we explore patient satisfaction and its implications. (shrink)

Elective surgery can be cancelled when resources are overwhelmed by emergency cases. We hypothesized that such cancellations, on psychological grounds, are followed also by inferior clinical results and we conducted a retrospective survey of patients following joint replacement surgery. Sixty patients having suffered from administrative cancellation prior to their operation during an 18-month period and with six months follow-up were identified and compared with another 60 matched patients after having the same type of surgery but without prior cancellation. All patients (...) received questionnaires on complications and on visual analogue scale (VAS) assessment on subjective wellbeing and quality of life (QoL) at follow-up. The study group reported 50 complications versus 33 for controls (P < 0.03). A borderline significant difference was found for myocardial infarction, 4 versus 0 (P < 0.05). There was no difference in VAS registration and QoL measurements did not quite reach statistical significance (P = 0.06). Cancellations (postponements) of elective surgery for administrative reasons may be followed by inferior clinical results, and this merits further prospective study. (shrink)

Quality of care is a prominent discourse in modern health‐care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi‐structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing (...) class='Hi'>care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health‐care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. (shrink)

Background:Ethical competence in nursing practice helps clinical nurses to think critically, analyse issues, make ethical decisions, solve ethical problems and behave ethically in their daily work. Thus, ethical competence contributes to the promotion of high-quality care. However, studies on ethical competence in Malawi are scanty.Objectives:The aim of this study was to explore ethical competence among clinical nurses in selected hospitals in Malawi.Methodology:A cross-sectional survey was conducted in four selected hospitals in Malawi with a sample of 271 clinical nurses. (...) Data were collected using self-administered questionnaires, which included a Moral Competence Scale for Home Care Nurses. Descriptive statistics and logistic regression were computed for the dataset using STATA version 12.0.Ethical consideration:The study protocol complied with all ethical requirements and was approved by the College of Medicine Research Ethics Committee under the University of Malawi.Results:The clinical nurses in Malawi are ethically competent. However, there is a significantly high number (p 0.05). Three determinants of high ethical competence level (strong will, judgement skills and recognition of discrepancy of intention) were identified through a reduced model after stepwise logistic regression analysis. Furthermore, results show that indicators of ethical competence include caring, confidentiality and observance of nurses dressing code. The study has also confirmed that the Moral Competence Scale for Home Care Nurses is a reliable tool to assess ethical competence in low-resource settings.Conclusion:The majority of nurses who completed the survey had low ethical competence. However, clinical nurses with high ethical competence level are required to competently manage complex ethical challenges in health facilities. Strategies for enhancing ethical competence such as continuing ethics education, establishment of ethics committees and provision of supportive supervision are recommended to enable nurses in Malawi attain a high level of ethical competence. (shrink)

El artículo tiene como objetivo exponer los fundamentos en que se sustenta la metodología de evaluación de impacto social de un programa de salud con vistas a mejorar la calidad de los servicios en el sector. El producto científico presentado muestra el análisis y síntesis de documentos a partir de la bibliografía actualizada publicada en revistas digitales como Salud Pública Cubana; libros y materiales de autores de reconocido prestigio. La propuesta contempla cuatro etapas fundamentales, cuyas bases teóricas fueron asumidas de (...) investigaciones con este objeto de estudio en el contexto nacional e internacional. This article aims at setting out the fundamentals that support the assessment methodology of social impact of a health program in order to improve the quality of health care services provided in the sector. The scientific product presented shows the analysis and synthesis of documents starting from updated bibliography published in digital journals such as Cuban Public Health; books and materials from prestigious authors. The proposal has four main stages which theoretical basis were taken from researches with the same object of study in a national and international context. (shrink)

Within health care systems, negative perceptions of lesbian, gay, bisexual, and transgender persons have often translated into denial of services, denial of visitation rights to same‐sex partners, reluctance on the part of LGBT patients to share personal information, and failure of workers to assess and recognize the unique health care needs of these patients. Other bureaucratic forms of exclusion have included documents, forms, and policies that fail to acknowledge a patient's valued relationships because of, for example, (...) a narrow definition of “spouse,” “parent,” or “family.” Bureaucratic exclusion has taken a particularly prominent form in the U.S. military. Until its repeal and termination in 2011, the “Don't Ask, Don't Tell” policy had for eighteen years barred openly gay men and lesbians from serving in the military. Among the effects of DADT is a dearth of information about the number and needs of LGBT service members who transition to the Veterans Health Administration for health care at the end of their military service. The long‐standing social stigma against LGBT persons, the silence mandated by DADT, and the often unrecognized bias built into the fabric of bureaucratic systems make the task of creating a welcoming culture in the VHA urgent and challenging.The VHA has accepted a commitment to that task. Its Strategic Plan for fiscal years 2013 through 2018 stipulates that “[v]eterans will receive timely, high quality, personalized, safe, effective and equitable health care irrespective of geography, gender, race, age, culture or sexual orientation.” To achieve this goal, the VHA undertook a number of coordinated initiatives to create an environment and culture that is informed, welcoming, positive, and empowering for the LGBT veterans and families whom the agency serves. (shrink)

Engagement with the historical and theoretical underpinnings of measuring quality of life (QoL) and patient‐reported outcomes (PROs) in healthcare is important. Ideas and values that shape such practices—and in the endgame, people's lives—might otherwise remain unexamined, be taken for granted or even essentialized. Our aim is to explicate and theoretically discuss the philosophical tenets underlying the practices of QoL assessment and PRO measurement in relation to the notion of person‐centredness. First, we engage with the late‐modern history of the (...) concept of QoL and the act of assessing and measuring it. Working with the historical method of genealogy, we describe the development of both QoL assessments and PRO measures (PROMs) within healthcare by accounting for the contextual conditions for their possibility. In this way, the historical and philosophical underpinnings of these measurement practices are highlighted. We move on to analyse theoretical and philosophical underpinnings regarding the use of PROMs and QoL assessments in clinical practice, as demonstrated in review studies thereof. Finally, we offer a critical analysis regarding the state of theory in the literature and conclude that, although improved person‐centredness is an implied driver of QoL assessments and PROMs in clinical practice, enhanced theoretical underpinning of the development of QoL assessments is called for. (shrink)

The Danish health care sector currently undergoes changes that imply a gradual transition from an evidence‐based activity model to a value‐based quality model centered on patient involvement and value‐based governance. The patient naturally occupies a central position in health care, and the transition therefore raises important questions about health care quality and how successive national health quality strategies value quality and ascribe roles and agency to patients. To explore the (...) complexity of these quality strategies, we analyze and discuss how political discourse moments influence the contents of the national health quality strategies and how variation in the construal of patient roles and agency indicates discursive struggle in Danish national health care policy. Underlying theoretical concepts are informed by New Public Management, the welfare state, health communication, and discourse theory. Our analytical approach is inspired by Critical Discourse Analysis and combines content analysis with linguistic analysis. (shrink)

AimBased on the Theory of Reasoned Action, we examined whether attitudes of nurses from different ethnic groups, subjective norms, behavioral intentions, assessments of relationships and communication were associated with their perceptions of the quality of perinatal care provided to lesbian women.BackgroundNurses administer healthcare, provide pertinent information and consultation to lesbians from pregnancy planning through birth.IntroductionDuring the past few decades, worldwide, there has been a rise in lesbian-parenting. Despite the changes in Israeli society’s public and legal reality, intolerance and (...) discrimination to the homosexual population is still prevalent in Israel’s healthcare system.MethodsA cross-sectional study conducted between 12/2015-4/2016. Of the 270 nurses approached, 184 completed a self-report anonymous questionnaire.FindingsThis is an important and timely study reflecting nurses’ perceptions of the quality of perinatal care provided to lesbians. The study findings reflect that attitudes, subjective norms, behavioral intentions, assessments of relationships and communication of nurses from different ethnic groups are associated with their perceptions of the quality of perinatal care provided to the lesbians. The hierarchical regression analysis demonstrated that attitudes, subjective norms, behavioral intentions, assessments of relationships and communication of nurses contributed 56% to the variance of nurses’ perception of their own quality of perinatal care.DiscussionTRA conceptualization predicted the quality of care of nurses from different ethnic groups treating lesbians in a perinatal setting.ConclusionTRA provides a useful framework for understanding and predicting the motivational effect of health care personnel with the lesbian population, being at risk for stigmatization and receiving less quality perinatal care.Implications for nursing and heath policyOur findings revealed the importance of formulating a recognized policy in the field of LGBT medicine at the national level. Further training of nurses as to the lesbians’ unique health needs, might improve the nurses’ relationships and communication as well as the quality of perinatal nursing care. (shrink)

The worldwide COVID-19 pandemic has shed more light on the difficulty of making health care decisions integrating scientific knowledge and values associated to life and death issues, human suffering, quality of life, economic losses, liberty of movement, etc. But the difficulties related to health care decisions and the use of innovative drugs or technologies are not new, and many countries have created agencies that have the mandate to evaluate new technologies in health care. (...) Health Technological Assessment (HTA) reports’ aim is to guide the decision makers in these difficult matters. There are two ethical components in HTA. The first is the report’s presentation of an ethical evaluation of the technology. The second is the value-ladenness of the HTA decision-making process itself. When implicit value judgments are not elicited, the justification of the final decision cannot be transparent. The present paper aims to identify and elicit the implicit value-judgments related to each step of the HTA process. This research is grounded on an applied ethics decision-making paradigm based on the role of value judgments in the decision-making process. The first part discusses two different approaches to values and value judgments in HTA. In the second part, citations mentioning value judgments extracted from a systematic review on the integration of ethics into HTA were categorized to elicit the value judgments and their criteria for each different HTA decision-making steps. The results show that there are 18 decision-making steps in the HTA process where 23 implicit value-judgments can be recognized. The range of these value judgments encompasses the whole HTA process: from the initial request, the presenting of the principal issues, to the final report’s dissemination. Since stakeholders need to understand which value judgments the conclusion of a report relies on, eliciting the implicit value judgments in the HTA decision-making process should yield more transparency. (shrink)

The Emergency Department is a crucial medical treatment unit of hospital specializing in emergency medicine. EDs are responsible for providing immediate healthcare facilities to patients arriving without prior appointment. Thus, evaluating patient satisfaction is of immense importance for efficient service delivery. Very few studies are found in Pakistan, related to patients’ satisfaction and utilization of ED services both from demand and supply perspective of ED-Services Supply Chains. Data was collected to assess 200 patient’s satisfaction towards quality of healthcare services (...) of ED of Sindh Government Qatar Hospital, Orangi town-a tertiary care hospital in Karachi. Structured questionnaire was developed to interview patients and their attendants. Results of SPSS analysis revealed that 55% of patients were transferred to ED within 5 minutes, which shows efficient patient queues and flow management. 64.5% patient’s average LOS was between 40-60 minutes. 71% get the availability of basic facilities in ED. Majority of patients i.e. 96.5% and 90.5%, showed satisfaction with the time spent and treatment given by the doctor. Majority of the patients are satisfied with the services and performance of ED of a tertiary care hospital and 76% patients showed willingness to recommend ED of Government Qatar Hospital, Karachi to others. (shrink)

Health-related quality of life measures aim to assess patients’ subjective experience in order to gauge an increasingly wide variety of health care issues such as patient needs; satisfaction; side effects; quality of care; disease progression and cost effectiveness. Their popularity is undoubtedly due to a larger initiative to provide patient-centered care. The use of patient perspectives to guide health care improvements and spending is rooted in the idea that we must respect (...) patients as self-determining agents. In this paper I look at the two main orientations to quality of life measurement: standardized and individualized measures. I argue that while these measures are attempts to provide for patient self-determination, they both fail to do so. In their place I suggest a new approach which overcomes their respective difficulties: a dialogic approach. (shrink)

In order to assure optimal care of patients with chronic illnesses, it is necessary to take into account the cultural factors that may influence health-related behaviors, health practices, and health-seeking behavior. Despite the increasing number of Romanian Roma, research regarding their beliefs and practices related to healthcare is rather poor. The aim of this paper is to present empirical evidence of specificities in the practice of healthcare among Romanian Roma patients and their caregivers. Using a qualitative (...) exploratory descriptive design, this study is based on data gathered through three focus groups with 30 health mediators in the counties of Iasi and Cluj (Romania). We identified various barriers to access to healthcare for Roma patients: lack of financial resources and health insurance coverage, lack of cognitive resources or lack of personal hygiene, but also important cultural issues, such as the shame of being ill, family function, disclosure of disease-related information, patient’s autonomy, attitudes towards illness and health practices, that should be considered in order to create a culturally sensitive environment in Romanian medical facilities:… The role of the health mediators within the context of cultural diversity is also discussed, as cultural brokers contributing to health care quality among Romanian Roma patients Bridging cultural differences may improve patient–healthcare provider relationships, but may have limited impact in reducing ethnic disparities, unless coupled with efforts of Roma communities to get involved in creating and implementing health policies. (shrink)

Wearable sensors are an integral part of the new telemedicine concept supporting the idea that Information Technologies will improve the quality and efficiency of healthcare. The use of sensors in diagnosis, treatment and monitoring of patients not only potentially changes medical practice but also one’s relationship with one’s body and mind, as well as the role and responsibilities of patients and healthcare professionals. In this paper, we focus on knowledge assessment of the online communities of Fitbit and the (...) Quantified Self movement. Through their online forums, we investigate how users’ knowledge claims, shared experiences and imaginations about wearable sensors interrogate or confirm the narratives through which they are introduced to the publics. Citizen initiatives like the Quantified Self movement claim the right to ‘own’ the sensor generated data. But how these data can be used through traditional healthcare systems is an open question. More importantly, wearable sensors trigger a social function that is transformative of the current idea of care and healthcare, focused on sharing, socialising and collectively reflecting about individual problems. Whether this is aligned with current policy making about healthcare, whose central narrative is focused on efficiency and productivity, is to be seen. (shrink)

Background: The process of obtaining informed consent continues to be a contentious issue in clinical and public health research carried out in resource-limited settings. We sought to evaluate this process among human research participants in randomly selected active research studies approved by the School of Medicine Research and Ethics Committee at the College of Health Sciences, Makerere University. Methods: Data were collected using semi-structured interviewer-administered questionnaires on clinic days after initial or repeat informed consent procedures for the respective (...) clinical studies had been administered to each study participant. Results: Of the 600 participants interviewed, two thirds (64.2 %, 385/600) were female. Overall mean age of study participants was 37.6 (SD = 7.7) years. Amongst all participants, less than a tenth (5.9 %, 35/598) reported that they were not given enough information before making a decision to participate. A similar proportion (5.7 %, 34/597) reported that they had not signed a consent form prior to making a decision to participate in the study. A third (33.7 %, 201/596) of the participants were not aware that they could, at any time, voluntarily withdraw participation from these studies. Participants in clinical trials were 50 % less likely than those in observational studies [clinical trial vs. observational; (odds ratio, OR = 0.5; 95 % CI: 0.35-0.78)] to perceive that refusal to participate in the parent research project would affect their regular medical care. Conclusions: Most of the participants signed informed consent forms and a vast majority felt that they received enough information before deciding to participate. On the contrary, several were not aware that they could voluntarily withdraw their participation. Participants in observational studies were more likely than those in clinical trials to perceive that refusal to participate in the parent study would affect their regular medical care. (shrink)

Despite being a collection of holistic assessment tools, the comprehensive geriatric assessment primarily focuses on the social category of age during the assessment and disregards for example gender. This article critically reviews the standardized testing process of the comprehensive geriatric assessment in regard to diversity-sensitivity. I show that the focus on age as social category during the assessment process might potentially hinder positive outcomes for people with diverse backgrounds of older patients in relation to other (...) social categories, such as race, gender or socio-economic background and their influence on the health of the patient as well as the assessment and its outcomes. I suggest that the feminist perspective of intersectionality with its multicategorical approach can enhance the diversity-sensitivity of the comprehensive geriatric assessment, and thus improve the treatment of older patients and their quality of life. By suggesting an intersectional-based approach, this article contributes to debates about justice and diversity in medical philosophy and advocates for the normative value of diversity in geriatric medicine. (shrink)

ABSTRACTIn The Netherlands, the public funding of a number of health care services is controversial. What can we learn from this about the moral concerns that underlie these judgements? And, if there is anything to learn, can we use this improved understanding to scrutinise the adequacy of particular decisions concerning the public funding of health care services? In the present paper, I will analyse three cases: corrective surgey, In Vitro Fertilisation and liver transplantation. I will summarise (...) the arguments that have been used to support or to challenge the public funding of these services. I will then assess the merits of Daniels’fair equality of opportunity account of justice in health care. Can this account improve our understanding of the moral concerns underlying our judgements about the public funding of these services? Can it serve to scrutinise the adequacy of particular decisions that are made concerning the public funding of health care services? My answer to both questions will be a qualified yes. Daniels’account can provide guidance, but not because we can deductively infer from it what is right and what is wrong. Instead, I will argue for a more casuistic use of the concept of fair equality of opportunity. (shrink)

ABSTRACT In The Netherlands, the public funding of a number of health care services is controversial. What can we learn from this about the moral concerns that underlie these judgements? And, if there is anything to learn, can we use this improved understanding to scrutinise the adequacy of particular decisions concerning the public funding of health care services? In the present paper, I will analyse three cases: corrective surgey, In Vitro Fertilisation and liver transplantation. I will (...) summarise the arguments that have been used to support or to challenge the public funding of these services. I will then assess the merits of Daniels’fair equality of opportunity account of justice in health care. Can this account improve our understanding of the moral concerns underlying our judgements about the public funding of these services? Can it serve to scrutinise the adequacy of particular decisions that are made concerning the public funding of health care services? My answer to both questions will be a qualified yes. Daniels’account can provide guidance, but not because we can deductively infer from it what is right and what is wrong. Instead, I will argue for a more casuistic use of the concept of fair equality of opportunity. (shrink)

We are appreciative of the broad range of commentaries our target article generated. The inquiry into the contingency phase of public health emergencies is nascent and the cl...